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Scared and feel ignored

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J

Jen.h

New Member
Relationship to Diabetes
Type 1
Hello everyone!
I’m not really sure what to say.
I was diagnosed with what was labelled ‘type 2’ diabetes when it was picked up in hospital about 9 months ago.
Blood sugar was out of control after that.
The consultant for my area was finally brought it and disagreed with the type 2
Diagnosis (I’m 34, 8 stone 4 but have a history of diabetes). He said LADA and type one. Decided to move me under the hospital care. Heard nothing else for 2 months. Almost died last last weekend because of a diabetic coma.
 
That sounds scary. Can you chase up the consultant? I know everywhere is busy right now but you should be seen. Your GP can do some chasing for you too if you can get hold of them.
 
Welcome @Jah27 🙂 Looking positively, it’s good you’ve now got the right diagnosis. Far too many people are assumed to be Type 2 when they’re actually Type 1/LADA.

Can you tell us what insulins you’re on and when you take them?
 
I’m not on any insulin yet, the wait time to be referred to the specialist team is 20 weeks. I’ve had 2 severe hypos in that time and constant hypers
 
Hi Jah27, so sorry to hear about what you've experienced.

I know that getting an appointment is difficult at the moment but it seems really important that you speak with someone. I agree that your GP should be chasing this or providing interim care in some way.

Might be worth giving our helpline a call on 0345 123 2399. They can have a look at any options that may be available or at least offer some support. The forum is a really helpful place so you're never alone in this. Feel free to keep reaching out with any questions or concerns you may have an we'll be happy to help.

If you'd like help with accessing your old account let me know, you're welcome to keep this one if you'd prefer.
 
Jen.h said:
I’m not on any insulin yet, the wait time to be referred to the specialist team is 20 weeks. I’ve had 2 severe hypos in that time and constant hypers
Click to expand...

Ok, that sounds very stressful having to wait that long. Can you tell us a little more about your diagnosis? And about the range of blood sugar results you’re getting?

Early introduction of insulin in cases of LADA helps preserve the remaining insulin-producing cells for longer. So it’s important to get appropriate help early.

Can you describe what happened with your severe hypos? Did you go high then drop right down a while later? How low did you go?
 
I was diagnosed randomly- I had acute cholecystitis. Had a HbA1c test while in hospital - was 58. Told me to see my GP. They didn’t read the notes and said there was no way I was diabetic (I was 34, female and 8 stone 5). Did another HbA1c and it was 63. Treated as type 2 from the start even it looked unlikely
 
Consultant intervened to disagree- LADA. Had no help or advice since. Sugar was 0.6mmol/l over the weekend.
 
Yes, was taken by paramedics. My blood had been between 1.1 and 2.4 for a couple of hours. They were surprised I was conscious. Said I probably had hypo unawareness
 
Inka said:
Ok, that sounds very stressful having to wait that long. Can you tell us a little more about your diagnosis? And about the range of blood sugar results you’re getting?

Early introduction of insulin in cases of LADA helps preserve the remaining insulin-producing cells for longer. So it’s important to get appropriate help early.

Can you describe what happened with your severe hypos? Did you go high then drop right down a while later? How low did you go?
Click to expand...
Fasting bloods around 6 mmol. Can go up to 25 then drop to 1-4 if I miss a meal. No one has given a diagnosis
 
(Sorry for the delay in replying @Jen.h I was having forum issues.)

What did they say in hospital? This doesn’t sound at all normal for diabetes. Have they investigated other causes? Things like Addisons can cause hypoglycaemia. So can problems with the pancreas. Could your cholecystitis be involved somehow? This sounds dangerous as well as unpleasant.
 
Although I had highs then went low a few hours later soon after diagnosis when I didn’t take insulin, I only dropped to the low end of normal (in the 3s) and I didn’t spike that high.

Were you given any dietary advice at all? Any follow-up appointment? Are they treating it as Reactive Hypoglycaemia? If so, it sounds a very extreme form.
 
Inka said:
(Sorry for the delay in replying @Jen.h I was having forum issues.)

What did they say in hospital? This doesn’t sound at all normal for diabetes. Have they investigated other causes? Things like Addisons can cause hypoglycaemia. So can problems with the pancreas. Could your cholecystitis be involved somehow? This sounds dangerous as well as unpleasant.
Click to expand...
It’s definitely diabetes, there is a strong family history of type 2. Since diagnosis blood sugar has generally been high (8-22). They put me on gliclazide. Apparently that’s what caused the near fatal hypo. No one can decide how to treat me though
 
Jen.h said:
It’s definitely diabetes, there is a strong family history of type 2. Since diagnosis blood sugar has generally been high (8-22). They put me on gliclazide. Apparently that’s what caused the near fatal hypo. No one can decide how to treat me though
Click to expand...

I wasn’t saying it wasn’t diabetes @Jen.h just that it sounded like something else was going on to cause you to drop so low. Hearing that you’re on Gliclazide makes sense now. I’d assumed you weren’t on any medication. Yes, it’s possible the Gliclazide caused that severe hypo, perhaps in combination with your blood sugar falling anyway caused by your body producing too much insulin too late in response to a blood sugar high.

You could try asking for tests to help confirm your type. These would be blood tests from your arm and are the Type 1 antibodies tests to look for the antibodies that cause Type 1, and the C Peptide test to see how much insulin you’re making.

Have they stopped the Gliclazide now? It’s not ideal for Type 1s anyway.
 
Sorry, I wasn’t saying you were. Apologies if it came across sharp ☹️ My bloods came back negative for antibodies, still haven’t had c-peptide tests. Despite the negative results the consultant was still pretty firm it was LADA, he said he has multiple type1 diabetics who never showed antibodies
 
You didn’t sound sharp @Jen.h 🙂 No need to apologise🙂 Yes, apparently a number of people with LADA don’t have the antibodies. Getting the C Peptide done too would add to the picture, but it seems they’re convinced you’re Type 1 LADA and that’s reasonable.

You didn’t answer about stopping the Gliclazide. I hope you have. Regarding your highs, are you keeping a rough count of the carbs in your meals so you can see how they affect you? That is, when you shoot up to 22 have you eaten 30g carbs (a small amount) or 90g (a large-ish amount)?

If I was you, I’d be looking at my diet and trying to find a) what was happening exactly by testing at appropriate times (before eating and 2hrs after eating as a start). I’d be looking to see if there was a drop without the Gliclazide.
 
I stopped the gliclazide after the scary evening. Currently not taking anything. I have started to understand and change my diet, I just feel very confused and lost right now ☹️
 
That’s understandable. Even without the awful stress of your major hypo, a diabetes diagnosis is a shock.

There are no books specifically about LADA but there are books about Type 1. As you’re not yet on insulin, they might not be helpful yet or perhaps they would as you could look ahead and get some general information.

There are other forum members who have LADA and who’ve had a difficult time of things. LittleSunflower is one that springs to mind.
 
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